Endometrioma cyst

Hi I'm new here, so here's a bit about me...

Been TTC for 4 years with one MMC 3 years ago. My husband and I recently attended an appointment to be referred for IVF but we had to redo our tests again before referral. I went to have a pelvic ultrasound today and the nurse said I had a 4cm endometrioma cyst behind my womb. She asked if endometriosis had ever been mentioned to me before, which it hadnt until today. She ended up doing a TV scan to get a better idea of the situation.

I've tried looking up endometrioma cysts, but they mainly refer to ones on the ovary. I'm obviously a bit concerned about this, as it's never been mentioned to me before and I'm worried that this will delay or affect IVF treatment, not to mention the possibility of having endometriosis. My local trust is currently going through public consultation as to whether to reduce or cut IVF funding completely, so I'm in a complete panic that worst case scenario, they cut the funding right before we get a chance to have treatment.

Has anyone had any experience of these sorts of things?

Thanks in advance :)

9 Replies

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  • I have two 7 cm endometriomas, one on each ovary. I haven't heard that they could be anywhere else?! I am sure someone else will jump in, but endometriomas on ovaries do usually indicate disease elsewhere. If I were you I would ask to see an endo specialist. You can find your nearest centre at bsge.org.uk and your GP can refer you. The specialists use a technique called excision to remove the endo. I was referred to a general gynae at my local hospital and his solution was to 'simply' remove my ovaries!

  • I'm going to try and get hold of my consultant next week to see if he can give me any further information. After googling the crap out of it this afternoon, the only thing I can work out is that if a cyst ruptures, some of the fluid spills into part of the pelvis, which could explain why it's not on my ovaries. I had a hemorrhagic cyst last year when I had my last ultrasound but as there was no follow up, I assumed all was okay. When i mentioned this to the sonographer, she looked back through my notes and said it was most likely a corpus luteum cyst.

    Reading the symptoms of endo, very few of it seems to apply to me right now or I've always had it. For example, since coming off the pill 4 years ago, I always spot for about 4 days before my period starts but the doctor said it was nothing to worry about. I'm always fairly tired, but I get up for work at 530am each day and have a hours commute to work. My periods have gotten heavier since I miscarried, but that was three years ago. The only thing I have noticed the past 4-5 months is that my cycle varies between 24 - 27 days, whereas before they were 27-28 days. Not much of a variation but not sure if that is the start of anything?

    So confused right now!

  • I read that it does matter whether your cycle is 24 days or 34, but it should be regular. It shouldn't vary. Mine varies from 27 to 30 days.

    But you're right, it is all so confusing. I read things on here then read something contradictory on another site. I suppose research is happening all the time.

    I keep saying it to people, but I cannot recommend the Facebook group endometropolis enough. I have learned so much from there. It's manned by highly educated people and some of Americas top endo surgeons reply to posts on there. All we can do is be strong, arm ourselves with lots of information and seek out the very best help that we can find.

  • It is important that we all keep an open mind when considering information and what may or may not be evidence-based. There are many conflicting 'opinions' when it comes to endo but very little is proven as yet. As a consequence many of the 'experts' on the group you mention disagree with each other and you will read conflicting views as you might on here. This is of course perfectly normal in a field where little is known but as a consequence we must be careful as to what we take as definitive fact. So it is important to know that what we 'learn' may just be one person's opinion. For example, views are often expressed as to the causes of endo based on the opinions of a retired US surgeon such as that we are born with our endo and retrograde menstruation is not involved. But the latest evidence is that both are likely to apply. The endo surgeon who heads the centre where the site's researcher works (Dr Andrew Cook) recommends his patients take contraceptives after excision to prevent potential recurrence from retrograde menstruation and yet it is regularly claimed on the group that it is not a cause. There are some highly educated and very well informed people on here too.

  • Not quite sure why you felt the need to comment there?

    I have learned so much from that site, as I have from this one. Both have armed me with the information and guts to turn my back on my general gynae and seek the expertise of an endo consultant.

    But what I do like about that site, is the ability to discuss consultants and that is how I found mine. The admins are incredibly helpful and quick to help.

  • There are three forms of endometriosis. Ovarian endo which is in the form of blood-filled (chocolate) cysts and your endometrioma is one of these. This will arise from your ovary and your ovary will have become pulled out of position by adhesions (bands of fibrous scar tissue) that have formed as a result of the inflammation from endometriosis and stuck your ovary to the back of your uterus. This is quite a common occurrence with endometriomas and this means that you have ovarian endometriosis. This will usually mean you have had endo for quite some time but some women don't have any significant symptoms.

    The most common and second form of endo is 'peritoneal' which forms on the peritoneum that is the thin membrane that lines the pelvic cavity. Have a look at my post on the peritoneum to get a feel for the pelvic anatomy.

    The third form of endo is in the form of hard lumps or 'nodules'. The formal name is deep infiltrating endometriosis (DIE). This represents long standing endo and is usually found on/in the uterosacral ligaments (one of several sets of ligaments that support the uterus) that run along the sides of the pouch of Douglas (note where that is in my peritoneum post), in the rectovaginal septum or sometimes between the bladder and the uterus (the uterovesical fold). This form will usually be picked up by MRI along with the usual distortion of anatomy by dense adhesions - but not always. Nodules can also be palpated by a rectovaginal exam - fingers up vagina and bum at the same time.

    Ultrasound will pick up endometriomas and sometimes deep endo depending on the skill of the sonographer but peritoneal endo won't show unless it has penetrated deep as it is usually in the form of shallow plaques. There is every chance that you will have peritoneal endo as the presence of endometriomas usually indicates endo elsewhere. This can have great implications for natural conception as the Fallopian tubes can become blocked and/or pulled out of alignment with the ovary so that even with ovulation there would be no chance of the egg getting into the tube. It's a shame because now you know you have endo this might have been a problem for you in all your years of trying.

    In terms of IVF there is no clear evidence that surgery for endo increases success rates unless it is to make the follicles of the ovaries more accessible for egg collection. You might find the European guidelines useful (ESHRE) that you can find at the link below. The relevant guidance is at pages 71 - 73 in the full version and on page 34 of the patient version.

    eshre.eu/Guidelines-and-Leg...

    So based on the guidelines this should not hamper your IVF but at some point you should probably consider having a diagnostic lap just to see the extent of the endo you have. Look at my post on the treatment pathway.

    In terms of cycle length, endo can affect some women by seemingly causing a gradual decrease in length. Mine was gradual but then after a pregnancy dramatically reduced. It was originally a 'normal' 28 days reducing gradually to 24 then after pregnancy went straight to 19 days and stayed there. However, I was doing ovulation tests while trying to conceive again and it was notable that my ovulation day was still the same at around day 13. This meant that the reduction was related to the second half of my cycle - from ovulation to the start of my period. This is the luteal phase when an egg would implant. In order for a pregnancy to result it is taken that the luteal phase must be at least 10 days for this to happen and mine had reduced to just 6 days so a pregnancy was never going to happen. This may be the case with you and again may have been a reason for you failing to conceive. There are many ways in which endo can bring about infertility, but I do believe this gradual reduction of the luteal phase in some women is one of endo's weapons in causing infertility.

  • I agree with Marie, endometropolis is a really good Facebook group... It helped me to understand so much more about the very limited (and often ludicrous ) 'information' my consultants and gynaes gave me after my diagnosis. Also good that you can discuss consultants and clinics there as I find it really helpful to talk to others and their experiences with these. There are some very knowledgable people on there, sufferers and medical professionals.

    I have also found a lot of information on here and some very helpful and supportive people too. I certainly would be lost without the Internet!

    I did go through IVF with a 4-5cm endometrioma on my right ovary. It was only discovered half way through treatment, by the nurse scanning me who was experienced in recognising different cysts. This led to my endometriosis diagnosis.

    It did prove a problem after egg collection as all the follicles refilled with fluid (this is normal) and along with the cyst my right ovary ballooned. It was very painful and I also got mild ohss. Other than that things went ok.

    I've just had 5 endometriomas excised and am planning on my next cycle. I'm just praying no more endometriomas pop in in the meantime!

    Speak to your consultant, but I would definitely by thinking about a refferal to a specialist at a bsge center. Good luck xx

  • PS. My cysts was 'borderline' in size for our IVF cycle to continue.... So they may have a size limit on cysts before commencing treatment. I had mine 'drained' after IVF. Big mistake as it refilled within months and ended up growing to 10-12cm. luckily I learnt about the benefits of excision! Sadly though, I still have had more grow again since (either unlucky or not the best surgeon.... I'm not at a bsge center, but I am at an endo clinic)

  • Thank you for your replies.

    I got a letter from the hospital a few days after my scan which said my uterus and ovaries are normal but I have a cyst behind my uterus and wants to discuss this in clinic. He said its nothing of concern but questions whether it is affecting my fertility.

    So my question is this... I'm 98% certain that this has appeared in the past year, as my last ultrasound showed everything was normal. So if that is the case, I dont think its an underlying issue to us not conceiving as we have struggled for 4 years prior to this?

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